My Alzheimer's Journey

Alzheimer's sucks. There is no two ways about it. Just. Plain. Sucks. Mom is a Debbie Downer and she always assumes the worst so when she called me to tell me Dad had Alzheimer's I didn't believe her. I thought she was overreacting. How horribly wrong I was. I actually remember where I was when my Mom called. I had just finished up washing my girls and was in the hallway totally dismissing her. I guess this must have been Spring of 2011 because we drove up to Amarillo to visited them for Dad's birthday in October 2011 and I was appalled by the state of the house. Apparently the loss of the sense of smell is one of the indicators of Alzheimer's and wow, was Dad missing the sense. Mom and Dad had cats and Dad was always so diligent on the care of the kitty litter box but whew - was the smell of cat piss overwhelming!!

Shortly thereafter,  I was able to convince my parents that they needed to move closer to me so I could help them. I couldn't effectively help them from 8 hours away. I started visiting on a somewhat regular basis to help sort through their items to keep, donate, or purge. Jon and I moved them down to Cedar Park in March 2013. I immediately got an elder care lawyer involved to update their power of attorneys and wills so that I could manage their finances, etc. I was working at the time but really, not really, as I spent countless hours consolidating bank accounts, managing bills, handling doctors appointments, etc. Dad was so restless at the apartment and Mom was so disengaged and I was working, so I hired caregivers to take Dad shopping, to the movies, and basically to get him out of the apartment. The caregivers were a small fortune so I looked into an adult daycare through AGE which Dad went to while I worked. I was able to go on adventures with Dad and we saw so many shows and movies at night and went on adventures with the girls during the weekend!

Mom suffered a heart attack in October 2013 and was hospitalized for 8 days and it was determined that she could no longer live independently. She and I saw this as a small blessing because we were working on moving Dad into a memory care after the Christmas holidays and weren't sure how to do so without hurting his feelings. Thankfully with Mom's health scare, it became a "Mom" issue instead of a "Dad" issue. I had already found a memory care close to the house and was able to move them very quickly. So I went from moving my parents from an 1800 square foot house with 20+ years of stuff and lots of closets to an 800 sq foot apartment to now a 2 bedroom suite. Whew. Dad and Mom managed ok at the memory care. They were surrounded by great caregivers and I was able to spend a lot of time with my parents. I was still able to comfortably take Dad out on adventures. Mom got frustrated with Dad's wandering and sun-downing and asked to move Dad to the other side of the memory care. So here is move number 4. Deep exhale.

In February of 2014, I am able to leave my job and able to be even more hands on with my parents. In May 2014 I came back from a friend's wedding in NYC and Dad no longer knew who I was. That was a gut punch. I had done enough research, read enough books, gone to enough seminars to know that Dad was going to forget who I was, but still it hurt like Hell when it happened. It still hurts. However, I could see in his eyes that he knew I was safe and his person, so that always helped. Plus the caretakers said whenever they did something that annoyed him, Dad would call out "Stop it Liz"! Ha! The caregivers and I  would always get a chuckle!

In the Summer of 2015, the awesome executive director of the memory care moved to a new facility and I knew damn well that when she left that all of the amazing staff would follow, which is exactly what happened. So I moved Dad to the new facility and Mom to an assisted living as she didn't need the locked doors that the memory care provides. Move 5 and 6. Mom didn't mind being at a different facility and I brought her over once a week to see Dad and Dad was in great care!

Dad's Alzheimer had stolen his brain in such horrific ways. In one seminar, I learned with Alzheimer's, one slowly loses their short-term memories and then long-term memories so it's like losing files in a file cabinet, meaning the person will regress through adulthood, to adolescence, to childhood. I also learned that a person with Alzheimer's may mistake a person for a long lost (aka dead) relative. Another trait of Alzheimer's, because the brain is basically going back to the "id", is that a person can speak or act out inappropriately (sexually). Thankfully Dad did not have any of these traits of Alzheimer's. He did; however, with the loss of his brain, lose the ability to speak, to walk, to chew. Watching my Dad lose the ability to carry on a conversation, to be able to dance, and to walk, among other abilities, was awful. He did not lose the ability to enjoy music though! I got him an Ipod and filled it up with music that he enjoyed and he truly brightened up! His eyes lit up and he was so much more responsive when he had his head set on and music playing!

We had a couple of health scares with Dad but he would bounce right back so when a hospice nurse called to tell me Dad wasn't well and it was his time, I didn't believe her. I almost laughed it off because we'd had so many scares lately. But she was right. I am so very grateful I was with him when he passed. I was able to stay with him all night and played music on my phone. "Promise Me" by Tracy Chapman played and then as he took his last breath, "I Got You" by Cher and Sonny played and I wept. I knew he was dying. I knew he was trapped in a body with a brain that betrayed him, but I was not ready for him to go. I loved being able to see him and spend time with him and now he is gone. It's still so weird and unsettling. Dad died January 30, 2016.

So in typical Mom fashion, she was unhappy at the assisted living facility, specifically due to the food, and Grace suggested she move to the memory care Granddaddy lived since we knew she liked the chef and knew all the staff (most were from the original memory care where she and Dad lived) so summer of 2016 we moved Mom to this memory care. Move 7.  Everything was going ok, the best it possibly could, until the memory care was bought out and I knew the already expensive rent was going to increase. So we decided to buy a house so Mom could live with us. Move 8. As my eyes get really big, I can say it's been an emotional roller coaster. I'm going to save Mom for another day.

My goal for sharing my Alzheimer's journey is to hopefully share some stories, provide some guidance, recommend some great books, and to empathize with a community of people who are struggling with going from the kid to the parents of their parents. It's not all cake and ice cream, I got to say.